Cannula battles and ramblings

"Hello out there! Would someone please come get all this junk off me? I've had enough already!"

Lilly settled down quickly after her feeds were started. They're going slow - started at 5 MLs an hour and increasing by 5 every 2 hours. (Lilly's normal rate is 26.) Lilly has been resting though she was upset several times because of gas pain. When we vent her, stomach acid shoots out her g-tube. But it gives her relief.

She has been getting very very agitated over the high-flow cannula in her nose. She yanked and pulled it and one nostril began bleeding. We were able to get the respiratory therapist to bring a smaller cannula so that her nostrils weren't so stretched. That settled her for awhile but she periodically cries out and begins yanking it and we have to hold her hands down. My husband is able to sing to her to calm her down and get her back to sleep. Until the next battle. She'll let out a war cry and start grabbing at the cannula.

Lilly's on a lot of pain medication still. When she is sleeping her eyelids don't quite close and her eyes are moving back and forth and all around. Drugs seem to usually make people sleepy but it doesn't really do that to Lilly.

You can see Lilly's fist up in the air in this picture:

As I was driving to the hospital this morning I was thanking God for sparing Lilly's life through the heart surgery and bringing her to 16 months old. (And I realized that yesterday was her 16 month birthday - not the day before. I always get into a "time warp" when I travel!) Then I began thinking of the children with Trisomy 18 that I knew of that died this year. And as always, I began wondering "Why?" and "Why not Lilly?" and "Why Caleb and Lakia and Sophie and Hannah Grace and the others I read about?" The Trisomy 18 world feels so jumbled up. I imagined these sweet children all having on a little hourglass like timer and each has one a different size. God calls them all home at different times. We ALL have one of those timers. But it just seems so pronounced when you have a child that you think you're going to outlive by many years. I often think of people that lived 60 years or more ago. They didn't have that confidence that we do now that their children would most likely outlive them. We really do live in an amazing time. I am still in awe of how the heart surgery Lilly had yesterday was done.

At the hospital here, whenever a baby is born they play a portion of Brahm's Lullabye over the hospital speakers. It is so sweet and exciting and for some reason always makes me want to tear up. I always wonder "Is that baby healthy?"

Jesus loves children. In Matthew 18:10 he said: "See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven."

I have friends that desparately want to have babies yet have miscarriage after miscarriage. Or don't get pregnant at all. Sometimes when I'm grocery shopping I hear parents talk hatefully to their children. I read about people that abuse their children in horrific ways. I have people close to me that were abused terribly. I think "Why does God bless people that don't love and cherish their children with those children?" They don't deserve them. Why God, why?

Yes I'm full of "whys?" and ponderings today. It's actually rather unusual because my days are normally so busy I don't have time to think like this. Probably a good thing! But sitting here in a hospital room will do it.

Even though I don't often understand why God does the things He does, I do believe that He is sovereign in all things. And that gives me peace. I just thought of Job and how he questioned God. God's response always gives me a thrilling shiver. God answered Job out of a storm (boom! crash!):

“Who is this that obscures my plans with words without knowledge?
Brace yourself like a man; I will question you, and you shall answer me.
“Where were you when I laid the earth’s foundation? Tell me, if you understand.
Who marked off its dimensions? Surely you know! Who stretched a measuring line across it?
On what were its footings set, or who laid its cornerstone—
while the morning stars sang together and all the angels shouted for joy?"

(To read the rest of Job 38 click here)

Seems like Budweiser ran commercials in the '90s (?) which said "Why ask why?" Personally I hate the taste of beer but that slogan really sums it up. (Well, leaving out the "drink Bud Dry" part at the end anyway.) Really - "why ask why?" God's on the throne. I'm not.

"For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD." - Isaiah 55:8